Freddd
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Is anyone actually improving from any of these "methylation protocols?" I don't think I've ever seen more written for such little return as there has been on methylation, with the possible exception of XMRV. I know you've benefited, Fred, but I think you'll agree you're a unique case, with unique genetic profile, etc. I've even seen reports that some poeple have gotten worse on methylation treatments. What is the track record turning out to be? Are there success stories posted somewhere? I'd like to hear from people who improved and hear about what they did, how long it took, what setbacks they faced, etc.
Hi Jeffrez,
I've even seen reports that some poeple have gotten worse on methylation treatments.
Yup, "detox" to a terrible extent forcing discontinuance. Most of the time it is hypokalemia and/or induced folate insufficiency. Then there is the "anxiety" variation which will be covered. That has to do with ATP startup. Most of the problems are actually ATP startup and have nothing at all to do with methylation. If they are methylation related, hypokalemia and induced folarte insufficiency. Hypokalemia can be fatal for any of several reasons. It needs to be dealt with, not called "detox" and ignored.
What is the track record turning out to be?
Those that get better go back to work and live a life. The ONLY reason I am still here is that I have set out to nail this problem before they prevent the possibility and condemn me to a miserable death, by making any supplement formulation not available in 1992 (AdoCbl, MeCbl, and L-methyfolate but that one has had the full pharmaceutical testing). I have made figuring out what went wrong what I am doing now. I used to do that for hire before I becasme too disabled to work. Then I took myself on. I'm playing for the survival of my family with the same problems I have. I know that the people that healed are those that were able to titrate the various components getting rid of those problems leaving them with the neurological brightening of everything with the MeCbl to deal with and the energized feeling (without calling it all sorts of scary names and believeing them) from the AdoCbl and/or L-Carnitne fumarate, which needs to be titrated to keep it managable. The ones that can follow it precisely with all the cutomizations, everything is done by paying attention to the body and correctly interpreting what is happening and titrating the various items as needed. I am going to be able to lay out a significantly better version. There are a lot fewer unknowns now. The substantial recovery, returning to work or physical rehab from years of disuse takes about a year from when the last body layer that needs to start healing does so. CNS healing is more difficult and takes longer. How well it works depends upon which pattern the persons symptoms follows. In various groupings the rate appears to be something like this.
RESTART METHYLATION - ESSENTIALLY 100% even if it takes several more things than the deadlock - quartet. Here is the first make or break point. Figure out the balance points at the AdoCbl-MeCbl and L=methylfolate with potassium and l-methylfolate. This a titrate to criteria. It may take a number of other supplements required to achieve this level of startup so a willingness to do trials is important. The basics nutrients are basic. So compliance in a customized way is complicated and not always achieved.
The other levels of healing startup depends upon the intial sucessful startup.
Have you run through this list yet? This list is the result of changing something from less than 5% effectiveness to something that works on 400 symptoms in a sizable percentage of people. There are damages and other problems that remain unaffected. Sometimes other things cause similar symptoms. It can be tricky. Following the clues is a difficult thing sometimes. I learned all the lessons in the following list by hitting the wall with them. I learned from each of my setbacks. I bet we can figure out what kept you from having a response.
THE 95% REASONS B12 AND FOLATE THERAPIES FAIL
Version 2.0 - 03/10/11, Version 2.1 - 05/08/11. Version 3.0 – 10/25/2012, Version 3.1 10/26/2012, Version 11/05/2012 3.2
1) They take an inactive b12, either cyanob12 or hydroxyb12. The research validating their use was primarily for reducing blood cell size in Pernicious Anemia, keeping the serum b12 level over 300pg/ml at the end of the period between injections. They make a statistically significant effect that can be seen in lab tests in a significant percentage of people compared to placebo. They do not heal most damage done by active b12 deficiencies and have little or no effect on the vast majority of symptoms. They may even block active b12 from receptor sites hindering the effects of real b12. They both cause a keyhole effect of having only a very limited amount (estimated at 10-30mcg/day) that can actually be bound and converted to active forms. They in no way increase the level of unbound active cobalamins which appear required for most healing. They do nothing beneficial in a substantial percentage of people (20-40%) while giving the illusion that the problem is being treated and if it doesn’t work, oh well, that’s the accepted therapy. There is no dose proportionate healing with these inactive b12s because it all has to go through this keyhole. Some people are totally incapable of converting these to active forms because they lack the enzymes or ATP
2) They take active b12 as an oral tablet reducing absorption to below 1%. A 1000mcg active b12 oral tablet might bind as much as 10mcg of b12. Again the b12 has to be squeezed through a keyhole that limits the amount and is subject to binding problems in the person whether genetic or acquired.3. They take a sublingual tablet of active b12 and chew it or slurp it down quickly reducing absorption back to that same 1% and limited to binding capacity. With sublingual tablets absorption is proportionate to time in contact with tissues. I performed a series of absorption tests comparing sublingual absorption to injection via hypersensitive response and urine colorimetry.
3) Of the many brands of sublingual methylb12 only some are very effective. Some are completely ineffective and some have a little effect.
4) For injectable methylb12, if it is exposed to too much light (very little light actually is too much) it breaks down. Broken down methylb12 is hydroxyb12. It doesn’t work at healing brain/cord problems of those who have a presumed low CSF cobalamin level. That requires a flood of unbound methylb12 and adenosylb12 (2 separate deficiencies) that can enter by diffusion. Adenosylb12 from sublinguals can ride along with injected methylb12.
5) They don’t take BOTH active b12s.
6) They don’t take enough active b12s for the purpose.
7) Lack of methylfolate
8) Lack of sufficient Methylfolate, a dose can start more healing than the same dose can complete.
9) Paradoxical Folate Deficiency - Folic acid is taken which can block at least 10 times as much methylfolate from being active inducing folate deficiency even if methylfolate is also taken. These induced deficiency symptoms are often called "detox" symptoms. Folinic acid is taken which can block at least 10-20 times as much methylfolate from being active inducing folate deficiency even if methylfolate is also taken. These induced deficiency symptoms are often called "detox" symptoms.
10) Lack of l-carnitine fumarate (rarely ALCAR), the 4th of the Deadlock Quartet
11) Lack of other critical cofactors.
12) Lack of basic cofactors
13) Glutathione, glutathione direct precursors, NAC and /or whey is taken causing what is often called "detox" while actually being induced folate and b12 deficiencies.
14) Having many additional supplements, drugs and herbs of unknown interactions and effects that block or antagonize primarily folate. Many drugs interfer with folate and/or B12.
I know you've benefited, Fred, but I think you'll agree you're a unique case, with unique genetic profile, etc
Actually, I'm not as unique genetically than many might think. When I first showed up here I was quite unaware of paradoxical folate deficiency and my working hypotheisis turned out to be incorrect, but Rich ended up pointing me right at it. I have folic acid conversion to l-methylfolate problems, just as 20% of population and many of not most of the people here. I also have folinic acid to l-methylfoalte problems and that is of unknown frequency. Those that need 15mg or so of Metafolin, the most common effective dose in the Deplin FDA studies, most likely have paradoxical folate deficiency. How many folks here have folate problems of some sort? Very common
My response to CyCbl and HyCbl is common, they reduce MCV in me and that is really what they were researched to do and they do it for 2/3 of people. It does a little more but very little. It makes a just noticable difference but not enough to heal me or even heal my skin. I was extremely deficient and hence extremely responsive. I was deficienct in all 4 of the Deadlock Quartet. The only uniqueness is that I can remeber most all illnesses back to 2 years old, very systematically explored and debugged the pathway and figured out many of the main pathways, and arrange all my exeperiences and those of some thousands of others into a system